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FIONA752
#1 Posted : Sunday, September 04, 2011 7:55:13 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/4/2009
Posts: 312

Hi to all my old pals on the forum and hello to all the new members!
I have not been on the forum since last year and felt it was time to return.
R.A average to O.K for me at present.
I would love to just be able to forget about it, but no, I can't.
This is because when I have a few days where I do the "normal" amount of activity
that someone without R.A does,I pay for it afterwards - the usual-
tiredness and stiffness, etc.
I have had R.A for 16 years and take Hydroxychloroquine Sulphate for it.
I also have secondary Sjogren's syndrome that causes me to have dry eyes and use artificial tears.
A year or so ago, I broke a vertabrae in my spine and altough I am no longer in pain
it will never be the same as it was previously and I have to take care not to strain my back.
I am Fiona, 54, with three grown up offspring aged 35,34 and 31 years.
I have one 10 year old Grandaughter.
I have a partner of 18 years called Steve and we live seperately in our own homes.


The issue of the car:

I do not drive, never have done. I was taking lessons at 17, but had the kids.

Yesterday Steve took me to test drive a car because his car is on it's last legs.
Before the R.A, we used to ride a motorbike and it was great fun.
Now, I really depend on Steve's car to get us to everything from the hospital to the Supermarket
to days out - we live in Devon. (I take taxis when he is not available. But I could not afford longer
journeys in these!)
The car we test drove was a sports car - low slung and bumping over every pothole in the road.
Steve is 52, very tall and slim and I have to admit that if the car was a fashion accesory, it would really
suit him.
But I knew with certainty that this car did not suit my Spinal injury or R.A!
In fact I could not imagine a more unsuitable car for the two of us to travel in together!

NEWS FLASH!!!! (I SWEAR THIS IS TRUE!)

The 'phone just rang and it was Steve.
He has had quite a bad problem with his back today, since test driving the Sports car yesterday, he has found
that today he cannot walk upright because he has hurt his lower back! (MY LEFT LEG HAS BEEN SLIGHTLY NUMB TODAY TOO!)
Bumpity, bumpity bump!!!!! GRRRRRRRrrrrrr!

However, he has been to another garage and found ANOTHER SPORTS CAR!!!! - also a top of the range, more sedate Megan,
with a roof that comes off and folds away in the boot? We drive the old model of the Megan now and it is sooooo comfy!

What on earth will we be test driving next?
The mind boggles!
See ya!Scared





FIONA752
#2 Posted : Sunday, September 04, 2011 8:50:13 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/4/2009
Posts: 312

UPDATE!

Steve has just read my blog and said that if this carries on he will be buying a one seater
sports car!

Also, he has forgotten to bring the Yorkshire puddings to go with our tea with him and is in too much
pain from his back now to pop up to the Co-Op and get some more!RollEyes
Tracy-Street
#3 Posted : Sunday, September 04, 2011 9:02:53 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/12/2011
Posts: 124
Location: Wilts, nr Stonehenge
Hello Fiona,

Welcome back, I'm sure you have been missed.

I am Tracy, 40, single parent of a 16 yr old boy who starts his first day at 6th form tomorrow. I'm excited and nervous for him, although he's cooooool about it lol.

I was diagnosed Feb 2010 and still having major problems coming to terms with it. I am on triple therapy, Etopan, 20mg's Prednisolone daily, and very soon to start on Enbrel as I have just failed on Cimzia after spending 3 days at the leisure of the NHS.

I am in constant pain and stiffness and wonder how 'normal' my life will ever be again.

My Employers are........not nice, I'm wanted off my job, but am going to fight them all the way. I am in Education, so this time of year is pretty busy. But I love my job.

I look forward to getting to know you more,

Trace xx
LynW
#4 Posted : Monday, September 05, 2011 12:37:03 AM Quote
Rank: Advanced Member

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Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Fiona

Good to hear from you again ... gosh, I hadn't realised you had been 'missing' for so long! Pleased to hear that you have had a little respite from the RA and you are still doing well on hydroxy too.

Well, I'm almost glad to say that Steve received his just desserts ... sports car indeed! Perhaps his bad back will cause a rethink on the subject. Talking of which I got stuck in the back of someone's (not to mention any names, Helly) sporty job last year ... on the NRAS car park of all places. Those of us with dodgy knees and bad backs do not perform well given low slung vehicular transport. I had to be dragged out very unceremoniously by Helly, Jo and one or two other kind people! Don't go there Fiona ... it's not a good place, stick with the comfy Megane!!

Look forward to catching up with you Smile

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

bevie
#5 Posted : Monday, September 05, 2011 12:14:52 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/4/2009
Posts: 346
Welcome back Fiona. Sorry about the bad back/s! I got stuck in the back of my brother's car years ago, at a funeral!

Bevxx
Kathleen_C
#6 Posted : Monday, September 05, 2011 2:41:20 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 1,689
Location: Durham
Hi Fiona and welcome back - it`s lovely to see you posting again : I often wondered how you were doing.

I definitely couldn`t manage a sports car - and tell Steve that at least his back pain will be temporary, unlike yours!! How are the family? Are they all OK?

Take care,

Kathleen x

FIONA752
#7 Posted : Monday, September 05, 2011 8:12:23 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/4/2009
Posts: 312

Hi Trace, Lyn,Bev and Kathleen. Thanks for your replies.
Oh Steve's bad back has certainly worked, at least for the present!
He was awake and in pain at 6.30a.m today, managed to get to his Hygienist's
appointment at the Dentist's and then walked in a strange and perculiar way
around Marks and Spencers with me this afternoon. (I carried the shopping because
although he is somewhat better than yesterday, he is still not right yet!)
I just hope he will be O.K at work tomorrow. He's in front of a computer there all day
and at the moment sitting hurts him after a while and he needs to stand up!
It's really quite scary seeing him flinch with pain because it's usually me!
He's pretty high up in an Architectural firm so it's not that anyone can make him sit down
it's just that he has a deadline to meet within a couple of weeks and they are behind.
Also a meeting in Surrey on Thursday entailing a long drive in the very early morning in somebody elses
car, there and back in a day and we live in Devon!
As for the car he has fixed the problem, he hopes, with the old one and is feeling confident of getting
another 2,000 miles, out of it.
He certainly appreciates how comfortable it is, now!
I have got the Chimney sweep coming in tomorrow because I have a firm belief that the heat from
real fires does my R.A good. Even with the central heating on, in the evenings I love to light the
fire in the lounge. Maybe it's just more relaxing or maybe the heat really is different!
Possibly the sub zero temperatures of last winter are still in my mind too!
Down here, this Summer has been rubbish weatherwise.
I bought a wooden bench which is outside my front door, last year. I even got cushions for the back
and the seat. Not once have I been able to put the cushions on it this year as the weather has been
just too changeable.
Maybe next Summer?Confused

Rose-B
#8 Posted : Monday, September 05, 2011 10:17:38 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 4/20/2010
Posts: 1,749
Location: Somerset

Welcome Back,

Missed your postings , stay with us now.

Your comments re Hubby and the sports car did may me smile. I can't sit low down in a vehicle anymore
as very uncomfortable. Sitting too long actually anywhere is not good.

I bought the car of the year by topgear last year. Citroen DS3, auto. It is GREAT , the seating, the automatic bit
takes pressure of our poor old body parts, plus very modern at the same time. I love it


Rose
jeanb
#9 Posted : Tuesday, September 06, 2011 9:19:21 AM Quote
Rank: Advanced Member


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Joined: 12/3/2009
Posts: 3,006
Location: Timperley
Hi Fiona

Lovely to hear from you again - welcome back. We have missed you!

As for the sports car - my Steve (are all Steve's a bit bonkers?) has his eye on a Mazda MX5. Now how on earth he expects me to get in and out of one of those is quite beyond me. I'm 16 stone and mobilise in a wheelchair! Can you imagine. I really do think it's the male menopause!! He's also interested in another motor bike but I have threatened to leave him if he dares (maybe I shouldn't have said that -he may take me up on my offer!).

I know what you mean about the weather - we haven't really had any summer at all and now it seems as if the Autumn is with us. It's very cold here today, with high winds and driving rain.

I'm on a desperate attempt to loose weight (3 stone off now) but a long way to go still and it seems to be slowing down so I am off to rejoin the local gym this afternoon in the hope of swimming twice a week.

Lovely to talk to you again

Take care

Love Jeanxxx
dorat
#10 Posted : Tuesday, September 06, 2011 10:43:02 AM Quote
Rank: Advanced Member


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Joined: 12/3/2009
Posts: 3,157
Location: Huddersfield
Hi Fiona,

Welcome back!
Good to hear from you again.

Love Doreen xx

sheila_G
#11 Posted : Tuesday, September 06, 2011 11:33:27 AM Quote
Rank: Advanced Member


Groups: Registered

Joined: 3/28/2011
Posts: 956
Location: North Preston
Hi Fiona

It's nice to meet you and welcome back to the forum.

Sheila x
FIONA752
#12 Posted : Tuesday, November 08, 2011 8:13:32 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/4/2009
Posts: 312

Thank you all for the lovely replies to my September blog!
I am a very lazy poster these days!
Part of the reason for this is that sometimes I just try to forget
the whole R.A business!
17 years after diagnosis and I still can't understand why on earth R.A
got to me!
At the moment my monumental task is trying to clear the clutter out of my house!
Downstairs is not too bad - but upstairs is needing attention!
Grown - up kids say they will help - I hope so because I'm going to need it!
I spent two days last week clearing my kithen of clutter and with R.A you (well,me at
least), always pay for all that outburst of physical activity.
Basically, I probably need to stay in a 5 star Hotel where chambermaids, etc, take care
of all the tedious, boring chores! But it's not going to happen and anyway I do love my home
really.
When I think back to the regular once yearly deep clean I used to do on this place - washing all the paint
-work down, etc, it 's enough to make me weep with frustration!
Nowadays, cleaning the cooker fills me with dread!
But it has got to be done.
Watch this space!Scared
FIONA752
#13 Posted : Tuesday, November 08, 2011 8:19:44 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/4/2009
Posts: 312

I should add, because it does have a bearing on my lack of entheusiasm
about the horrid house clean-up, that it is made worse because I have an
old Spinal injury, so it is not just the R.A putting me off, it is the
knowledge that I have to be very careful with my back.RollEyes
Rose-B
#14 Posted : Tuesday, November 08, 2011 10:13:19 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 4/20/2010
Posts: 1,749
Location: Somerset


I know Fiona exactly what you saying. Oh for a magic wand.

Gosh I remember when I used to be on hands and knees and washing skirting boards - not now.

Hope your children help you, but they quite often say they help but then the girl/boy friend
calls and then the job gets left . . . . .
volfram
#15 Posted : Tuesday, November 08, 2011 11:50:57 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/5/2009
Posts: 119
Location: warrington
Welcome back Fiona,
good to hear you are back again.
sue v xx
FIONA752
#16 Posted : Sunday, November 04, 2012 8:35:35 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/4/2009
Posts: 312



HI AGAIN TO ALL MEMBERS, OLD AND NEW ALIKE!

Tomorrow will mark the 18th week since I broke another bone in my Spine!

I can't believe it's happened again and I don't even know why it did!

I have spent the last 18 weeks with the eldest two of my grown up kids helping me

manage everyday things in the house. My eldest son had just got a new flat and hasn't been able to move

into it yet because of me. But I really feel that he has to move into it very soon now, because it's just not fair on him.

I have to take Co-Codamol on prescription from my G.P 3 times per day for the pain, it was 4 times per day at first and I gradually managed to get by

on the 3 doses.

I had an X ray, then an M.R.I scan, then a DEXA scan, then a Nerve conduction test and muscle test because after a couple of weeks my

right foot became semi paralyzed due to this new fracture. (I'm told it's improving now.)

I first

became aware of the right foot, because every time I walked down the stairs my right slipper would just fall off my foot two or three times!

I also noticed that when walking on a hard surface the sound made by my right foot sandal sounded different to my left foot sandal.

The evening after the day of my M.RI Scan I actually fell really badly on the pavement going up to the local Co-Op and really badly tore up my left knee.

After the initial shock I just sat on the pavement and sobbed!

Luckily my dear boyfriend of nearly 19 years, Steve, was with me and comforted me and took me around the Co-Op and then back home.

I know I'm 55 now, but I felt more like 105!

I was told by my Rheumatologist that it was not an R.A drugs related thing, these Spinal fractures and I don't have Osteoporosis, just Osteopeania which is at the

low end of normal bone density. But he said that I am of quite a slight build and so the low end of "normal" is, well "normal"!

Also I have lost a stone since my last spine fracture 3 years ago. (That amazed me because I had been sitting about in a chair in my kitchen for nearly 9

weeks prior to the Rheumatologist wanting to know what my weight was. I am 9st 11lbs now.) I never weigh myself so would not have known otherwise.

Anyway, on a brighter note, I managed to get over to Spain from the 21st to 25th September and bought some nice wine on the ship coming back.

The weather in northern Spain actually got really warm, like the final burst of Summer while we were there and Steve and I had sun tans by the time

we got back!

Steve calculated that I was walking 7 miles or so on both the days that we were there, I was very impressed when he said that.

Staying in the Hotel and on the Ship was fantastic, no housework, cooking, etc. My back only twinged once!

But now that I'm at home again things are getting painful and I watch the clock for painkiller time.

R.A wise, as last time, miraculously, the R.A stiffness etc seems to virtually go while the pain in my spine is so bad!

I have no idea why and neither does the Rheumatologist!

Well, that's my latest news.

Warmest wishes to you all.

FionaSmile
sylviax
#17 Posted : Monday, November 05, 2012 1:36:03 PM Quote
Rank: Advanced Member


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Joined: 5/28/2012
Posts: 665
Location: Newton Abbot
Hi Fiona - I'm new here since you last posted, and you sound so bright and breezy, I'm looking forward to getting to know you. I got a bit confused when I read the earlier part of this thread, because I didn't notice it was back in 2011 - doesn't time fly.

So sorry to hear that you've broken another bone in your spine - that must be so difficult for you, especially after last time - hope you're on the way to being mended now. Family are great - I've got 4 kids too, but they're quite a bit younger than yours, the eldest is 19 and the youngest 13 - but they'll all as tall as me and much stronger and more agile, so I regularly ask for their help to do this n that! Especially getting stuff out of tall cupboards ...

Nice to meet you - Sylvia xx
Be kinder than is necessary because everyone you meet is fighting some kind of battle
FIONA752
#18 Posted : Friday, December 07, 2012 10:09:24 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/4/2009
Posts: 312


Hi Sylvia, thank you for the reply to my little blog post.

I am about to be reassessed for my D.L.A and Income Support and hardly know where to start

with the form filling!

I have read Rich's advice on this site and I think it's going to take a good chunk of this weekend to complete it!

Wish me luck!

FionaConfused
sylviax
#19 Posted : Saturday, December 08, 2012 11:03:10 AM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/28/2012
Posts: 665
Location: Newton Abbot
Hi Fiona - I've just been reading your post on the other thread and it is so sad that you're facing such a lot of worry now. Like you, I hate having to fill in forms, and always put it off, but once you've got it posted then I'm sure you'll feel relieved. It sounds like a very big form, but just take it one question at a time, and get somebody else to read it through when you've completed it to make sure you haven't missed anything important. Quite often the worst bit about forms is getting all your paperwork together so you know all your facts, dates, etc.

Good luck - Sylvia xx
Be kinder than is necessary because everyone you meet is fighting some kind of battle
FIONA752
#20 Posted : Saturday, December 08, 2012 7:14:34 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/4/2009
Posts: 312

Dear Sylvia,

You are so right about getting all the paperwork sorted out!

I had some photo copies from my G.P. and have spent the rest of

today photo copying my own collection of Medical reports to send in with

the questionnaire! I haven't got very far yet with filling it in, but I do now have

the documentation to go with it!

My printer would not work either so someone had to come over and help me just

to get the stuff printed.

I had a terrible night too with pain from a strained rib and pain all day again today,

like yesterday, so I am on pain killers as usual and although I am a Graduate the strain of this form filling

is dreadful!

I just pray that all goes well now.

I shall check out the C.A.B advice from Rich under Benefits on here and hope it helps me to know what to say!

Beast wishes,

FionaRollEyes
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